Jump to content
Acne.org
Search In
Find results that contain...
Find results in...
Hayza

Accutane and permanent hair loss

Recommended Posts

Hey everyone, I decided to make this thread because after googling around about the topic I found some discussions on the acne.org forum about this topic, but none from recent years.

Basically, this is about my personal experience about Accutane causing permanent hair loss, which I'm sharing both to make people more aware and to see if anyone else had the same experience.

My maternal family has a really bad history of cystic acne. My mom herself suffered from cystic acne from about age 13 to age 30, and by the time it disappeared for her her face had been severely scarred. One of my elder sisters also suffered from the same extreme cystic acne from around age 12, and at age 18 she took Accutane for it. We were living in Egypt (where my dad is from) at the time, where the stuff is super unregulated, so she was able to just walk into a public clinic and ask for it and they gave it to her and sent her on her way. No blood tests, no health warnings, no anything. But it worked out great for her, and within 7 months her acne was permanently gone. But her hair especially never suffered from taking Accutane—it got dry whilst she was taking it, and a few more strands than usual would fall out, but that was it, and about a month after finishing Accutane it was back to normal.

When I got to be 13 years old, I also developed deeply painful cystic acne. I would be in so much pain I couldn't think straight, I would sleep only a few hours a night and very badly at that because the pain from my face touching a pillow would keep me from sleeping and then shock me awake, even the small facial movements I would make talking would have me tearing up with how much it hurt. This was many years ago now but even just remembering it is causing me to cringe. Not to mention the horrible insecurities I experienced about my physical appearance, along with good old middle school bullying. Seeing as it worked great for my sister, about a year in my mom searched for information and found that Accutane is usually safe for 14 year olds if carefully monitored, so she took me to a dermatologist to get it checked out.

The dermatologist was much more informative than a public clinic would've been, warning us of the different health risks and so on. She decided that although I was 14, I would be safe to take Accutane at a low dose. And my skin looked great after a few months, by the time I finished I only had hyperpigmentation left which faded within about a year, I never had any major breakouts again in my life. Now when you look at my skin you also can't tell I ever had acne.

But the one thing this dermatologist never warned us about was hair loss. It didn't occur to me that hair loss could be an issue on Accutane. Of course Accutane dried my hair up, which meant I only needed to wash it no less than once a week. I noticed some increased shedding when I would wash my hair but I figured I was only washing it once a week, and it would probably stop when I stopped taking the Accutane, so I shrugged it off. I had very thick, shiny Egyptian hair lol, which I had grown out to my thighs. When I asked the dermatologist about it she straight up said Accutane isn't known to cause hair loss, which I know now is a total lie, and should even just be common sense considering how it messes with your hormones and scalp moisture. But again, I figured it wasn't a big deal.

The real issue came once I stopped taking Accutane. I had been on it from March to September, and once I stopped taking it within two weeks my hair started going completely downhill. It was extremely greasy—even before I took Accutane I only washed my hair every other day (which may seem excessive but isn't if you know Cairo humidity), but now I would wash it in the morning till it squeaked and by night my scalp would be a vat of grease. But the absolute worst thing was the fallout. Even though my hair was thick and extremely long it usually wouldn't shed much before, maybe like 15ish strands in the shower and that was it. But now I would wash my hair and so much hair would fall out each time that if I bundled it it between my hands, it would take on the size and density of a baseball. Add to this the fact that I had to wash my hair every day, and I was losing a baseball's amount of hair every single day. When I would brush my hair and it would fall around my feet the floor looked like someone had just gotten a major haircut. 

I tried to search around again but the most I could find was people saying you might experience a little hairloss after stopping Accutane, but it would stop soon. So I tried to calm down and figured soon I would stop losing hair and it would all grow back. But by December of that year, only 3 months, I had lost no less than half of my hair, and I wish that was an exaggeration. I went to a different dermatologist, since we didn't trust the last one after she assured me hair loss wouldn't happen, and the new dermatologist prescribed me minoxidil and spironolactone (which I found out that despite being prescribed for hair loss, causes some lucky people like myself to lose even MORE hair). After the shedding continued with very minimal hair regrowth, she also prescribed Viviscal. Viviscal didn't stop the shedding either. By this point I felt like I would rather have had a face full of extremely painful acne and hyperpigmentation and scarring than this hell, and honestly, I still feel like that now. At one point I suspected the spironolactone might be having some adverse affects, so we stopped it, which slowed the shedding a bit, but I was still continuing to lose hair at the speed of light. All the prescriptions happened from one December to the next, but in the mean time, by February you could clearly see the shape of my skull because my hair had thinned so much that the layers that were left only just covered my scalp; in March I had to cut off my thigh length hair to my shoulders, which for my 15 year old self was extremely upsetting and humiliating (especially because all the other girls around me still had such traditionally long hair, as is generally the style overseas). We thought there was no way my hair could keep falling out but it just keep going and going, at the same rate as when it first started even though I had lost probably 3/4ths of my hair by that point.

It took until I was 16 for my hair to stop falling out as badly, and a couple more for my hair to stop being so greasy, but by then the damage was permanently done. Since the massive fallout stopped (7 years) my hair has never really grown back; everything that remained at that point continues to grow, but it's so unbelievably thin compared to what it was before. Wherever I part my hair on my head there's a good centimeter of just scalp between each layer of hair, my hair part goes from the top of my head to halfway down the back of my head, and I have to part it in a very specific way to cover an even bigger bald spot on the top-back of my head. If I made a ponytail of all the hair I have now it is as thick as if I just collected one side of my fringe with my old hair. My hair just clings to my head so it only ever hangs around my face. I can’t style it because it's so thin and I'm terrified extensions will just cause what's left to also fall out. No natural oils, medicines, diets, anything I have ever tried has regrown my hair even slightly. Every hair loss specialist I have been to has been at a loss. If I had a nickel for every time someone still comments how thick my hair used to be when I was young and how sad it is now, I could probably buy a private island.

Of course, now if you search "Accutane permanent hair loss," you will find many studies on the horrible permanent hair loss Accutane causes. I just wish I was more educated all the way back then. If I had a choice today, knowing what I do now, I would taken more time to search alternatives to Accutane, but even the dermatologist talked like Accutane was my only choice if I wanted to get rid of cystic acne forever. I hate that the lie of Accutane is still so widely promoted as the only cure, and it's horrific how many people end up with even more serious health issues than this that affect them for a lifetime because they were convinced of the Accutane lie. Seriously, it just isn't worth it. I feel like for every person I talk to who took Accutane successfully, I meet someone whose life was literally ruined like me in some way because of the drug. When it's such a 50/50 chance and there are so many alternatives out there for cystic acne now, I don't think Accutane should be anything but someone's very last absolutely dire choice.

Share this post


Link to post
Share on other sites
13 hours ago, Hayza said:

Hey everyone, I decided to make this thread because after googling around about the topic I found some discussions on the acne.org forum about this topic, but none from recent years.

Basically, this is about my personal experience about Accutane causing permanent hair loss, which I'm sharing both to make people more aware and to see if anyone else had the same experience.

My maternal family has a really bad history of cystic acne. My mom herself suffered from cystic acne from about age 13 to age 30, and by the time it disappeared for her her face had been severely scarred. One of my elder sisters also suffered from the same extreme cystic acne from around age 12, and at age 18 she took Accutane for it. We were living in Egypt (where my dad is from) at the time, where the stuff is super unregulated, so she was able to just walk into a public clinic and ask for it and they gave it to her and sent her on her way. No blood tests, no health warnings, no anything. But it worked out great for her, and within 7 months her acne was permanently gone. But her hair especially never suffered from taking Accutane—it got dry whilst she was taking it, and a few more strands than usual would fall out, but that was it, and about a month after finishing Accutane it was back to normal.

When I got to be 13 years old, I also developed deeply painful cystic acne. I would be in so much pain I couldn't think straight, I would sleep only a few hours a night and very badly at that because the pain from my face touching a pillow would keep me from sleeping and then shock me awake, even the small facial movements I would make talking would have me tearing up with how much it hurt. This was many years ago now but even just remembering it is causing me to cringe. Not to mention the horrible insecurities I experienced about my physical appearance, along with good old middle school bullying. Seeing as it worked great for my sister, about a year in my mom searched for information and found that Accutane is usually safe for 14 year olds if carefully monitored, so she took me to a dermatologist to get it checked out.

The dermatologist was much more informative than a public clinic would've been, warning us of the different health risks and so on. She decided that although I was 14, I would be safe to take Accutane at a low dose. And my skin looked great after a few months, by the time I finished I only had hyperpigmentation left which faded within about a year, I never had any major breakouts again in my life. Now when you look at my skin you also can't tell I ever had acne.

But the one thing this dermatologist never warned us about was hair loss. It didn't occur to me that hair loss could be an issue on Accutane. Of course Accutane dried my hair up, which meant I only needed to wash it no less than once a week. I noticed some increased shedding when I would wash my hair but I figured I was only washing it once a week, and it would probably stop when I stopped taking the Accutane, so I shrugged it off. I had very thick, shiny Egyptian hair lol, which I had grown out to my thighs. When I asked the dermatologist about it she straight up said Accutane isn't known to cause hair loss, which I know now is a total lie, and should even just be common sense considering how it messes with your hormones and scalp moisture. But again, I figured it wasn't a big deal.

The real issue came once I stopped taking Accutane. I had been on it from March to September, and once I stopped taking it within two weeks my hair started going completely downhill. It was extremely greasy—even before I took Accutane I only washed my hair every other day (which may seem excessive but isn't if you know Cairo humidity), but now I would wash it in the morning till it squeaked and by night my scalp would be a vat of grease. But the absolute worst thing was the fallout. Even though my hair was thick and extremely long it usually wouldn't shed much before, maybe like 15ish strands in the shower and that was it. But now I would wash my hair and so much hair would fall out each time that if I bundled it it between my hands, it would take on the size and density of a baseball. Add to this the fact that I had to wash my hair every day, and I was losing a baseball's amount of hair every single day. When I would brush my hair and it would fall around my feet the floor looked like someone had just gotten a major haircut. 

I tried to search around again but the most I could find was people saying you might experience a little hairloss after stopping Accutane, but it would stop soon. So I tried to calm down and figured soon I would stop losing hair and it would all grow back. But by December of that year, only 3 months, I had lost no less than half of my hair, and I wish that was an exaggeration. I went to a different dermatologist, since we didn't trust the last one after she assured me hair loss wouldn't happen, and the new dermatologist prescribed me minoxidil and spironolactone (which I found out that despite being prescribed for hair loss, causes some lucky people like myself to lose even MORE hair). After the shedding continued with very minimal hair regrowth, she also prescribed Viviscal. Viviscal didn't stop the shedding either. By this point I felt like I would rather have had a face full of extremely painful acne and hyperpigmentation and scarring than this hell, and honestly, I still feel like that now. At one point I suspected the spironolactone might be having some adverse affects, so we stopped it, which slowed the shedding a bit, but I was still continuing to lose hair at the speed of light. All the prescriptions happened from one December to the next, but in the mean time, by February you could clearly see the shape of my skull because my hair had thinned so much that the layers that were left only just covered my scalp; in March I had to cut off my thigh length hair to my shoulders, which for my 15 year old self was extremely upsetting and humiliating (especially because all the other girls around me still had such traditionally long hair, as is generally the style overseas). We thought there was no way my hair could keep falling out but it just keep going and going, at the same rate as when it first started even though I had lost probably 3/4ths of my hair by that point.

It took until I was 16 for my hair to stop falling out as badly, and a couple more for my hair to stop being so greasy, but by then the damage was permanently done. Since the massive fallout stopped (7 years) my hair has never really grown back; everything that remained at that point continues to grow, but it's so unbelievably thin compared to what it was before. Wherever I part my hair on my head there's a good centimeter of just scalp between each layer of hair, my hair part goes from the top of my head to halfway down the back of my head, and I have to part it in a very specific way to cover an even bigger bald spot on the top-back of my head. If I made a ponytail of all the hair I have now it is as thick as if I just collected one side of my fringe with my old hair. My hair just clings to my head so it only ever hangs around my face. I can’t style it because it's so thin and I'm terrified extensions will just cause what's left to also fall out. No natural oils, medicines, diets, anything I have ever tried has regrown my hair even slightly. Every hair loss specialist I have been to has been at a loss. If I had a nickel for every time someone still comments how thick my hair used to be when I was young and how sad it is now, I could probably buy a private island.

Of course, now if you search "Accutane permanent hair loss," you will find many studies on the horrible permanent hair loss Accutane causes. I just wish I was more educated all the way back then. If I had a choice today, knowing what I do now, I would taken more time to search alternatives to Accutane, but even the dermatologist talked like Accutane was my only choice if I wanted to get rid of cystic acne forever. I hate that the lie of Accutane is still so widely promoted as the only cure, and it's horrific how many people end up with even more serious health issues than this that affect them for a lifetime because they were convinced of the Accutane lie. Seriously, it just isn't worth it. I feel like for every person I talk to who took Accutane successfully, I meet someone whose life was literally ruined like me in some way because of the drug. When it's such a 50/50 chance and there are so many alternatives out there for cystic acne now, I don't think Accutane should be anything but someone's very last absolutely dire choice.

So sorry that you experienced this at such a young age. We are brainwashed to trust doctors - when I tell friends not to trust them they look at me like I am a crazy person. I would give my life up if I could turn back the clock. I  like you try to warn others of the dangers but they don't we dangers but they don't want to listen. I can understand young people thinking they are invincible but I don't understand why parents and doctors will argue with me that it is safe.
There is no safe pharmaceutical drug, even the regulators agree that this is the case. 
Please, please report your side effects to Rxisk and World Health Reporting Organisation.

Share this post


Link to post
Share on other sites

I am so sorry you have gone through this. I experienced the same thing, and I am trying to find a solution. I took 20 mg for a whole year. My hair was great while on Accutane, I washed it every four days, which never happened to me before (not ever since I hit puberty), and I had so much new growth. I took it from April 2015 till April 2016. Immediately after stopping with it, I experienced, well, severe is a mild expression for my situation, hair loss. I think I only have about 1/3 of my hair now, maybe even less, and it gets greasy after about 6 to 7 hours, so I have to wash it every day. I used to love coloring my hair red, I can forget about it now, and I will never be able to grow it pass shoulders, I will have to cut my hair in longer pixie style for the rest of my life (I am 28 years old). My doctor also didnt notify me about that kind of side effects, and she completely ignored me while I was desperate when my hair loss started. My hair loss lasted until October of 2016, so its been over a year, and my hair looks horrible, its thin and it hadnt grown back. I am thinking on trying quantum medicine, because I dont know what else to try.  But, like you, I am also warning people about accutane side effects, and I know many people who cured their cystic acne without this poison. I will keep trying to find an answer and solution, I have the kind of face who just needs hair to look pretty. If I ever find something that works, I will write about it here.
All the best. :)

Share this post


Link to post
Share on other sites

My wife suffered from breast cancer in 2014 and the chances are very less for my wife to live more than 1-2 years. 

The doctors prescribe the drug Taxotere for the treatment of breast cancer cases in the U.S. so they gave me Taxotere drug in 2014. She really did not know why she could not grow her hair back after the treatment. 

I was always optimistic that her hair would grow back in coming days. Last two months,  She saw the commercials in the newspaper from various law firms about Taxotere. After that me and my family face very hard time because we finally realize that it is never going to grow back. 

My wife called a law firm, that handles drug cases. I and my wife spoke to the attorney from the law firm today that he has filed 9 cases regarding Taxotere. He is sending a report today so that we can get started. 

If you or a loved suffer from permanent hair loss, you can also contact Taxotere Hair Lawsuit Lawyer or law firm they will help you to get the real compensation.

Share this post


Link to post
Share on other sites

I took Accutane many years ago. Shortly after stopping, I discovered that I had several large circular patches of hair missing. It was shocking and scary! I went to several doctors and finally found a dermatologist that gave me cortisone injections into the bald spots. This worked very well and the hair started to grow back very quickly. The injections I had would probably not be a treatment for large areas of missing hair on the head or diffuse hair loss. However, I wonder if people might benefit from oral steroids such as methylprednisolone to stop the reaction to the medication or progression of further hair loss. A friend of mine had been diagnosed with multiple sclerosis a few years ago and was given a one week steroid pack. After that, all of her symptoms disappeared and never returned. You would have nothing to lose to try the medication for a week if you could get a doctor to prescribe it.  

Share this post


Link to post
Share on other sites

I experienced the same:( and my acne has returned back.. I feel very depressed lonely...

I don’t want to take accutanae again and become bald :smileys_n_people_40:
 

Share this post


Link to post
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.


  • Personalized Advice Quiz - All of Acne.org in just a few minutes

×